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Will Pitt's Blog entry as of 10:33 05/18/05
http://blog.pdamerica.org/?p=50

Update on the Andy Stephenson situation
May 18th, 2005
Various corners of the web have been buzzing with rumors and stories about the status of Andy Stephenson. I, myself, started something of an ugly firestorm on the topic on Tuesday when a bunch of seemingly contradictory information came my way and caused me to question exactly what was going on. To wit: There were allegations made that Andy was not in fact suffering from pancreatic cancer, and that the fundraising blitz done in the last weeks was based upon less-than-accurate information.

After two long days of phone calls and emails, I have come to a few absolutely concrete conclusions. First, Andy does in fact have pancreatic cancer, and is a long way from being out of the woods. Second, there was no bad faith, exaggeration or ill intention whatsoever in the process of raising money for him. Third, and perhaps most importantly, the confusion that has burst forth in the last several days on this issue stems from the simple fact that the people involved in this process have never done anything like this before - raising large amounts of money from anonymous people on a website - and that several people of good faith were publicly posting parts of the story here and there on the web, lending the impression that there was more than one version of the truth floating around.

The details, of course, are more complicated than these straightforward sentences, but the details lead back to the same conclusions.

Back in February, Andy was diagnosed with a tumor in or around his pancreas. Subsequent doctors, subsequent tests and subsequent diagnoses confirmed this. As in any medical situation, though, the specifics of the diagnoses and prognoses changed from doctor to doctor. Anyone who has ever been sick, or dealt with someone who was sick, knows how this kind of thing can be fluid. A couple of weeks ago, thanks to the help of friends, Andy was put into the system at Johns Hopkins, the premier facility for this kind of disease.

The explosion of confusion surrounding this situation took place, in a twist of rotten irony, because of a piece of good news. Andy got a test at Hopkins that revealed the tumor to be ‘encapsulated.’ I am not a doctor, and the details of why this was better news than originally thought are beyond my ability to describe with any coherence. Yet the fact remains that the worst-case scenario was a little less pressing after this new test.

But when this news was posted as an aside comment on the web, word began to spread that Andy was not, in fact, afflicted with pancreatic cancer, and that the fundraising efforts that were based on this diagnosis were done in bad faith. I, myself, reacted to this badly. The very public proclamations of pancreatic cancer which I and others were told to make did not seem to jibe with the seemingly offhand revelation that this might not be the case.

I suddenly got a whole bunch of messages from other organizations which had likewise supported the fundraiser. If the facts were different than originally stated, they feared, it would be a blow to their reputations and would harm their ability to raise money for their own causes. They feared, in short, that they had helped to sell a false bill of goods, and had done so in no small part based upon my word on the matter. I raised, not to put too fine a point on it, a good deal of hell after this.

Here’s the deal: The new test revealing the ‘encapsulated’ tumor was misunderstood by many, including myself, as meaning the situation was far less serious than originally stated. The misunderstanding came, in no small part, because the people describing the test results (along with myself) know as much about medicine as I know about flying a stealth fighter.

Rather than try to blast through everything, better to address the most-asked questions that have come up.

1. Does Andy have pancreatic cancer?

Yes. The news he got last week may well auger towards a better outcome, but it is still pancreatic cancer and is still very, very serious. Frankly, we are at the point where the doctors will not know exactly what they are dealing with until they get in there and have a look. Once they do, there will be one of two possibilities found: A cancer that can be dealt with, and a cancer that cannot. The surgery is slated for next week, but could conceivably happen sooner if there is a cancellation on the Hopkins surgery schedule.

2. Could Andy have had this surgery somewhere besides Hopkins?

Technically, yes. He could have it in a number of places, but the fact remains that Hopkins is the best place to deal with pancreatic cancer. The odds of a favorable outcome fall off the table when procedures like this are done elsewhere. Andy’s doctor, apparently, is a Jedi Knight of a surgeon who has developed his own version of the Whipple procedure that is less invasive. Bear in mind that not too many years ago, pancreatic cancer was a no-doubt death sentence. He is lucky to be there, and we are lucky that he is there.

3. Is the surgery going to cost what was originally claimed?

Yes. We managed to raise an eyelash above $50,000 for this, and every penny of it has been needed. In fact, once the chemo and recovery process starts, this merry-go-round is going to start up all over again…albeit with wiser and cooler heads in charge of the process.

I am more than a little disgusted with myself for the part I played in causing all of this confusion. I hope that this will serve to put any questions to rest, so that we can focus on what is important: Pulling for Andy as he goes through this wretched situation. He is in Baltimore now, surrounded by friends, and is well cared-for. When more information comes along, I will let you know.

As an aside, there are some out there on the web who have used this situation as a means to attack Andy because of his work on election reform, or because they just don’t agree with his politics. To say this is disgusting, ghoulish and beneath contempt is to put it kindly. My posting this isn’t going to stop them from continuing their wholly despicable campaign, sadly.

For those who require more proof than what I have provided, Andy has begun the process of setting up a spokesperson with HIPAA permissions to deal with and make public pertinent documentation. You aren’t going to get everything, because 99% of this isn’t anyone’s damn business but Andy’s and his doctor’s, but enough proof to silence even the most pestilent of critics will be provided once the HIPAA process is done.

Strength, Andy.

This entry was posted on Wednesday, May 18th, 2005 at 10:33 pm and is filed under General.